Discover and read the best of Twitter Threads about #chiari

Most recents (5)

I'm turning 45 this week.

I just learned I have cognitive impairment akin to early stage Dementia or Alzheimers usually seen in someone 30 - 40 years older than i am.

I'm loosing it y'all.

Had a cognitive/memory assessment done today w one of my neuro.

They are trying to access the extent of the damage from the strokes & subsequent brain damage & progression.

My memory loss is getting much worse. I forget everything.

I have damage in frontal lobe, basal ganglia, progressive #encephalomalacia in right parietal lobe, volume loss, lesions throughout brain & brain stem, 4 inoperable 🧠 #aneurysms, mass around pineal gland & #chiari.

My brain's ravaged from #strokes & Covid.
Read 11 tweets
It's still early, but I wanted to share some initial indications of a significant breakthrough in the treatment of my daughter's #hEDS & #MECFS. I attribute progress to Calcium D-Glucarate, a supplement known for improving phase 2 detox of estrogen & other steroid hormones. 1/
The usual caveats: I am a patient caregiver, and not an MD or a medical researcher. It is early. This is just one patient. This is a very complicated area. I am sharing not so much to encourage people to try the supplement but rather to encourage more research in this area. 2/
My daughter is part of the cohort of (mostly) women whose #hEDS took a severe turn for the worse around puberty, prompting #MECFS, #craniocervicalinstability, #POTS, #Chiari, #tetheredcord and other manifestations. This is important context. 3/
Read 22 tweets
In a Letter to the Editor published yesterday by the Journal of Translational Medicine, I describe my hypotheses about a key source of pain and inflammation in #MECFS that may also play a role in post-exertional malaise (#PEM). 1/ ……
My hypotheses are grounded in experience as a caretaker for my daughter with hypermobility Ehlers-Danlos Syndrome (#EDS), #MECFS, #POTS, #Chiari malformation, and #craniocervical instability and my reading of the #MECFS and #lipedema literatures. May also apply to #LongCovid 2/
In a nutshell, my hypothesis is that vascular damage and/or endothelial dysfunction causes interstitial fluid to leak from blood vessels of people with #MECFS, leading to formation of adipose tissue that becomes fibrotic, causing inflammation, hypoxia & widespread pain. 3/
Read 18 tweets
Thank you to @BethDarnall for speaking at #Minnesota @MinnesotaDHS #Opioid Work Group mtg on Thursday: Spoke of importance of #patientcenteredcare, #patientconsent necessary if taper & strongly advised AGAINST force tapers & using pre-determined MME'S. #ChronicPain #NoOneSize
MN #opioid Work Group created Taper Guidance. It will be out 4 public comment soon. Some areas extremely problematic. Although it states NOT 2 taper solely 2 meet system or state policy; MN Quality Improvement requires Drs 2 meet MME thresholds = TAPER TO MEET STATE POLICY. 🤔
If #ChronicPain pt wants 2 try 2 taper from #opioid analgesics 4 any reason & CONSENTS, there needs 2 be safe way 2 do it. Problem throughout U.S, incl #Minnesota; is non-consensual tapering. Many experts, incl #addiction specialists, stress dangers & even state it's UNETHICAL.
Read 11 tweets
If I could wave a magic wand:
– we would prove that intracranial hypertension (as measured by ICP bolt) is common in our pt populations, more often than not w/ normal LP opening pressures, w/o papilledema
– we would prove that occult tethered cord is common and runs in families
– we would learn whether we should untethether these kids as kids, if that might help them avoid the hell to come
– we would prove that you can get recurrent leaks that imaging will never catch
– we would understand the relationships between #MECFS #EDS #MCAS #POTS #Fibro, without which we will never be able to get to *prevention*
– every GP/PCP would know each of these diagnoses cold and could refer you to...actual specialists
Read 6 tweets

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